Pancreas and Kidney transplant - share experiences

Posted by charba1 @charba1, Jul 23, 2011

Does anyone know 

I am 26 years old and was added to the kidney pancreas rransplant list on feb 21st 2014 can anhbodh tell me about thier transplant experiences and. Parricularlh thier wait time. J also live in washington and am listed in phoenix whT hppens when yoh geg that call how long dk j have to get thier ty

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Congratulations on being placed on the transplant waiting list! For me, It was a frightening experience because I did not know what I was facing. It was also hopeful, because I knew that my docs were carefully watching over me.
Time seems to moves slowly. In my case, I became very sick and could not do much of anything. I had to really work at getting some exercise, and my husband had to make sure I would eat. I was afraid of the surgery, and afraid that I would not get a transplant in time. So I cried a lot.
Every one’s wait is different, and your medical team will be able to answer questions about your particular condition. Ask your questions to them and believe their answers. They know what they are doing and they know about your needs.
When you get the call, you go right away to your transplant center where they get you ready for surgery. Your transplant team will talk to you about how much time you have to get there.
I received a Liver/kidney transplant 5 years ago. And I am doing great! I wish for you to have a successful transplant when the time is right for you.
Rosemary

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@rosemarya

Congratulations on being placed on the transplant waiting list! For me, It was a frightening experience because I did not know what I was facing. It was also hopeful, because I knew that my docs were carefully watching over me.
Time seems to moves slowly. In my case, I became very sick and could not do much of anything. I had to really work at getting some exercise, and my husband had to make sure I would eat. I was afraid of the surgery, and afraid that I would not get a transplant in time. So I cried a lot.
Every one’s wait is different, and your medical team will be able to answer questions about your particular condition. Ask your questions to them and believe their answers. They know what they are doing and they know about your needs.
When you get the call, you go right away to your transplant center where they get you ready for surgery. Your transplant team will talk to you about how much time you have to get there.
I received a Liver/kidney transplant 5 years ago. And I am doing great! I wish for you to have a successful transplant when the time is right for you.
Rosemary

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Thanks so much for your reply my head is just spining with questions.
The doctors told me i might wait up fo one year im just ancious and nervous
cant believe this is happening but. One day i will look back and remembee
this life changing expierience

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@rosemarya

Congratulations on being placed on the transplant waiting list! For me, It was a frightening experience because I did not know what I was facing. It was also hopeful, because I knew that my docs were carefully watching over me.
Time seems to moves slowly. In my case, I became very sick and could not do much of anything. I had to really work at getting some exercise, and my husband had to make sure I would eat. I was afraid of the surgery, and afraid that I would not get a transplant in time. So I cried a lot.
Every one’s wait is different, and your medical team will be able to answer questions about your particular condition. Ask your questions to them and believe their answers. They know what they are doing and they know about your needs.
When you get the call, you go right away to your transplant center where they get you ready for surgery. Your transplant team will talk to you about how much time you have to get there.
I received a Liver/kidney transplant 5 years ago. And I am doing great! I wish for you to have a successful transplant when the time is right for you.
Rosemary

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I understand what you mean about your head spinning! You sound like you have a good positive attitude, this will help you a lot. You might consider keeping a journal to keep record events/dates that occur during your waiting and eventual transplant. Years from now, it will be interesting to review. It is amazing how much you will forget! I kept one and I am happy I did.

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@rosemarya

Congratulations on being placed on the transplant waiting list! For me, It was a frightening experience because I did not know what I was facing. It was also hopeful, because I knew that my docs were carefully watching over me.
Time seems to moves slowly. In my case, I became very sick and could not do much of anything. I had to really work at getting some exercise, and my husband had to make sure I would eat. I was afraid of the surgery, and afraid that I would not get a transplant in time. So I cried a lot.
Every one’s wait is different, and your medical team will be able to answer questions about your particular condition. Ask your questions to them and believe their answers. They know what they are doing and they know about your needs.
When you get the call, you go right away to your transplant center where they get you ready for surgery. Your transplant team will talk to you about how much time you have to get there.
I received a Liver/kidney transplant 5 years ago. And I am doing great! I wish for you to have a successful transplant when the time is right for you.
Rosemary

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How long did u wait

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I waited 5 1/2 months after I was listed. Waiting times are different for everyone. Organs are very carefully matched to a recipient. So the waiting time is needed for the best organ to become available for you that “matches” you.
I have met people who have waited less time than me, and I have met people who have waited more time than me.
Be patient, and trust that one will be available when you need it.

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I am a pancrease transplant receipant any one else on here that has this kind of transplant?

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Hi @sandras,
Welcome to Connect. I’m glad you found us. I moved your message to this thread because I’d like to introduce you to @sophiadelgado and @rosemarya. See their messages about transplant above.

Sandras, when did you have your transplant? How is the recovery going?

Colleen
Connect Community Director

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I’d also like to tag @bszychow, who posted last Sept that she was on the pancreas transplant list https://connect.mayoclinic.org/discussion/i-recently-started-on-the-insulin-pump-after-taking-shots-for-over/

@bszychow and @sophiadelgado – How are you doing? We’d love to get an update from you both.

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@colleenyoung

I’d also like to tag @bszychow, who posted last Sept that she was on the pancreas transplant list https://connect.mayoclinic.org/discussion/i-recently-started-on-the-insulin-pump-after-taking-shots-for-over/

@bszychow and @sophiadelgado – How are you doing? We’d love to get an update from you both.

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I have transfered to Seattle UW hospital since it is in my region and I am
still waiting

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Welcome back @sophiadelgado. How frustrating (not sure which adjective to use here) it must be to wait so long. Did you see this post about getting on multiple transplant lists?

@sandras How long did you have to wait?

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I had to wait 1 year to the date.

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What that year must’ve been like @sandras. I cannot imagine. But I bet you can imagine how @sophiadelgado must feel. She’s been waiting over a year now.

Sophia, I forgot to add the link to the message with information about being on multiple lists. Here you go: https://connect.mayoclinic.org/discussion/i-have-been-added-to-the-transplant-list-for-a-liver-at/

Sandras, how long ago did you have your transplant and how is the recovery going? How are you doing today?

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Hi All, I have only been on the list since 9-11-2015. Got my first call in less than 2 months, but died waiting on a plain. 2 other calls with an EBV Pos. but I am EBV Neg. I am slowly going crazy. I don’t know what a year or more would be like?

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@bszychow

Hi All, I have only been on the list since 9-11-2015. Got my first call in less than 2 months, but died waiting on a plain. 2 other calls with an EBV Pos. but I am EBV Neg. I am slowly going crazy. I don’t know what a year or more would be like?

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For a pancrease transplant? Are you a diebettic type 1?

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